Curb our Enthusiasm

The new Mental Health Care Act, passed yesterday by the Indian parliament, has been winding its way slowly through the Indian legislature since 2013, and replaces the Mental Health Bill of 1987. On the one hand, advocates celebrate its passage, realizing that limiting the use of electro-convulsive therapy, addressing the immense shortage of mental health experts, decriminalizing suicide, increasing the legal autonomy of people experiencing mental health problems, and mandating that mental health services be affordable and available are parts of the picture.

The narrative that picture is embedded in is one that we should take a closer look at and consider.  It is the catchy narrative that explains mental disorders as a medical condition that requires specific address by treatment. A comforting and easy way to see mental illness, for those of us who like neat thought packages, as we tend to do. At its least nuanced, this creates a mental picture where we see a sickness, and see medication as the first answer, and confinement as a strategy while the medication is adjusted. Neat and clean.

Of course, simple solutions can mislead when the true problem is complex and hard to unravel, and, no doubt, the context in which mental disorders exist is truly complex.

If it is true that mental illness is inextricably linked to poverty, then this complicates the picture.  We know that people experiencing major mental illness are nearly always poor.  Do they become so because of the mental disorder, or does poverty “produce” mental disorder? The frustrating answer is, of course, yes to both.

If it is true that gender oppression is inextricably  linked to mental illness, the picture complicates further. Deeply devalued widows rejected by family and thrust out into poverty and homelessness, women subjected to brutality at the hands of family and strangers, and the picture blurs even more.

If it is true that performing jobs that are torturous for human beings to do, jobs that are reserved for the poorest of the poor, with little hope of relief, causes people to lose their bearings, retreat, and lose their clarity of thought and memory, again, the picture needs to be refocused.

The above inconvenient truths reveal that simple solutions to “bring people with mental disorders back on track” only address a part of the problem, and may create unanticipated problems, at least for affected people. If indeed, a society “manufactures” people with mental illness as a result  of poverty, oppression and associated brutal life conditions, at least in part, we need to keep that in our minds, and more importantly, our mindsets.

For me, it is helpful and important to remember and even embrace the complexity of the interplay between social and environmental factors.  The medical model of illness will never fully answer the question of how to address the big questions raised by the issues of mental disorders.

Meanwhile, people with mental illness languish in mental hospitals, beggar’s homes, and on the streets. We can celebrate a legal framework that offers people support, assistance, control, and recognition of their humanity and value.  There is something to be said for helping people to get “back on track”. Don’t think, however, that it will be enough.

 

 

 

 

Go Up

“When in doubt, go higher.”

Dr. Wolf Wolfensberger

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This was not advice about avoiding floods or choosing a hiking path. It was advice about our thinking.  When we are working with an idea, or a thought, or a phenomenon, or a struggle, we must strive to push our thinking to a higher level – to address universals rather than individual particularities. This was a great gift frequently offered by Dr. Wolfensberger to those he mentored and taught over his many years of change agentry around the plight of and possibilities for people with disabilities.  It has come into my mind many times this summer as we prepare to gather together a group of leaders in India to discuss, learn about, and push our own thinking about crafting a positive future by, with and for people with disability in India.

In just a few short weeks, a team from 3 countries will be introducing the core ideas of Social Role Valorization to India for the first time. A group or 40 or so leaders from across India will meet for three days to immerse themselves in the foundational ideas that have been so important to laying the groundwork for moving away from segregation and devaluation, and towards integration and full lives. In our preparations, the core trainers have been discussing SRV examples to illustrate the “big ideas”, such as the culturally valued analogue, role circularity, and the conservatism corollary.  Heady ideas, exciting, and ones that fit fairly “high” on the hierarchy of universals. They are also ones that we can easily illustrate and bring to life for Indian people from our years of work in the US, Australia, and the Republic of Moldova, respectively. In doing so, we risk the response earned by missing the nuances of Indian culture and society which will cause people to respond with “not here in India”. On the other hand, we can tailor our presentations to be specific only to India, and in doing so no doubt get it wrong in truly understanding what we are seeing and, perhaps “shoehorning” Indian experience into our own set of principles.

“Go Up”, we hear.  In this context, I think it means two things:  “Trust the Ideas”: Remember that the ideas we are teaching within Social Role Valorization are based on universal societal principles.  They matter and they apply wherever human beings live in community.  “Trust the People”: People have the capacity to interpret ideas, generalize them, adapt them and then make them specific to their own context when it makes sense to do so.  I look forward to what will be a potent mix of strong ideas, personalized illustrations, adaptations, and, I essence, all taking a leap of faith together. People matter, ideas matter, and, when we get stuck, we will “go up”.

 

A Thin Line

One of the challenges that the disability rights movement has put before us all is to see disability in the context of how society has created a somewhat arbitrary “line” between ‘disabled’ and ‘abled’.  We have been urged to see disability as a natural part of the human condition, with all people falling along that continuum at different places throughout life.  For example, we enter the world almost completely disabled, and many of us will become so again in our later years. In between, we all experience varying degrees of ability and disability, which really enters into a simple discussion of how much support do we need at a given time to negotiate the world.

To me, this gives a more satisfying way to think about disability and ability, and also helps undo some of the medical model formation that trains professionals (and everyone) that there are two distinct types of people –  ‘us’  (the helpers and so-called non-disabled people) and ‘them’  (the disabled people themselves). It was an uncomfortable way for me to structure my thinking at first, but over time I have come to appreciate it a great deal. It is much more nuanced and real to me. Fitting this in into our practice as professionals is very hard, though, because much of the traditional thinking around disability is at odds with this in significant ways.  In fact, it seems as though many professionals find it threatening.

Here in India, medical model thinking is an strongly embedded notion that is just now being challenged by those fighting for the cause of disability rights.  As has happened in many other places, this strong advocacy is led by people with physical disability, and is informed by historical civil rights movements all over the world.  There is a long way to travel for people with developmental and psycho-social disability, as there is for many other groups of marginalized and oppressed people. Mindsets run deep, but the conversation is moving, and the lines that separate people are a little less clear.

 

Great Questions, Answers that Matter

Judith Snow

“A great question refuses to be answered; so it keeps leading us into deeper connections with each other & into deeper thinking.”

– Judith Snow

 

Change agent, activist and friend Judith Snow once said this, and it immediately captured my imagination at the time. Over the years, it has become a powerful tool of practice for me. A rich set of questions can yield immense wisdom when asked of many people, with a genuine curiosity at the core of the asking.

When we first began to think about the work that needs doing in India around disability and equity, and there came an opportunity to do a part of that work, it seemed wise to begin with some important questions that will add richness to the understanding of both the “asker” and the “asked”.

And so has our work begun, not with answers but with 4 simple questions. These questions are being asked in 45 participatory sessions being held across India, and they are being asked of families, people with lived experience of disability, professionals, and everyday Indian people who might be described as community members. The answers to the questions are respected, recorded, captured, and shared back. They also begin to fill out the tapestry before we can ask other questions, the very first questions of service design, “Who are the people?” and “What do they need?”

The four questions which are grounding our work include the past, the present, the future, and the action. Each has profound importance. One cannot know where one is going unless one knows where one has been. One cannot establish a vision without an acknowledgement of the present. One cannot formulate action without sensing a sharp tension between what is “now” and what “should be”.  A discomfort and even chafing at the conditions of today propels us towards a future in strong ways.

The answers are compelling, profound, diverse, and slowly painting a picture of life, hope, change, and possibility, while acknowledging the hard and faithful work that needs to be done.

When we have asked these questions 45 different times, among 45 diverse groups of people gathered in meeting rooms, offices, conference rooms, and wherever people can carve out a space, we will pull together these expressions of pain, knowledge, wisdom, hope, and, yes, direction, into a single snapshot which will boil down this work into one rich view. This informs the work of Keystone Institute India, can inform the work of many others, and will in some sense cause change simply by having asked elegant questions that echo in people’s minds and hearts for a long time.

“What is the HISTORY of people with disability – in your society, your neighborhood, your community, your family, your life?”

“How are things NOW?”

“What is the VISION for the future?”

“What ACTION must be taken to make that vision a reality?”

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One of the most profound moments came for me, as a facilitator, when 12 men and women, all currently institutionalized in government mental hospitals for decades, came to a session and told us of their realities. One man simply stated, “While we have been here for 15 years, the world has changed, but we have not changed at all”.  This observation brought a hush to the room, as all 35 strong of us realized that one of the profound impacts of segregation are the discontinuities with the outside world which get created. Everyone in the room- professionals, families, and others were immediately able to feel the visceral impact of what it means to be rendered an alien in your own culture through having been separated in a timeless, changeless world where you are frozen in time. If we want to do right by people, listening to their experiences of the past, present, and future matters a great deal. Listening is a part of the process, and it may be a part of the solution to the problems of discrimination, marginalization, and oppression as well.

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Who could have imagined?

Who could ever have imagined this moment, given the 50 year struggle to assist people with intellectual disability to take their place at the community table in the United States?

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It is May 7th, 2016, at the Millersville University’s graduation ceremony. It is time for the “Student Address”, delivered each year by a graduating student who exemplifies the university experience. Daniel Castellanos, university student, soon-to-be graduate, theater major, actor, campus activist, and now, commencement speaker, walks to the podium with an easy confidence. He is the very picture of a young man full of promise, and with just the kind of swagger reserved for the young on the exhilarating edge of anything-is-possible.

He begins his speech with a small joke, delivered easily and with charm, and loosens up his audience of regalia-clad faculty and classmates, and their families. He’s a natural.  Daniel delivers a powerful take-home message of exuberant joy and promise for the future. Just the thing to start out this ceremony, which marks a major life moment for each of the students who will take the stage and receive their graduation honors on this day. Cheers ring out – Daniel is one of their own, and stands with his classmates and proud faculty on the verge of possibility – the good things of life are not only possible, but probable and within reach for each of the students, and they know it. Indeed, Daniel is one of them.

Daniel spoke openly and honestly of his intellectual disability as a simple fact which makes up a part of his identity, but it is clearly only a part of who he is. In this company, it seems almost incidental. Hard to imagine that this man spent his elementary, middle, and high school years in segregated classrooms for at least a good part of the time. As for all the students, university success leads most students on a path that is different than they would otherwise have experienced. For Daniel, this is particularly poignant and meaningful.  For Daniel, university success may well mean a path away from ever being defined by his disability, a path away from lifelong client-hood and into lifelong citizenship. For those of us who get to bear witness to this small but exquisite moment, we can see the fruit of our hard and faithful work in some way.

For me, I take heart at the small, exquisite moments that are mostly unheralded but that signal the changes which are stirring within India as the promises made to India’s disabled citizens and their families begin to take root and grow.  I think of the men and women across India  in mental institutions looking with hope towards gaining their freedom, the families who are striving to create a secure future and a decent education  for their children, and the people themselves  struggling to find their own voice and be heard.  We must approach this work of building an inclusive community with pragmatism and grit, but also with unreasonable hope that the extraordinary will happen.  Thank you for this message, Daniel.

 

 

Colors in our Lives

by Bindu Sengar

On 26 February 2016, I joined Keystone Institute India (KII) with much excitement as well as a few doubts and confusions in my mind. KII’s director, Betsy Neuville, welcomed me warmly, like a friend I had known for a long time. I felt at home and an integral part of Keystone right from the start. I came from an organization where I was working on a different set of issues and with a large team. I was a bit worried about how I would adjust in an environment where I would be working not only on different social issues, but also as the only one in the office for weeks at a time, with the director and program manager supporting me from a distance when they were not in Delhi, and our primary contact being through video-conference and email. Shortly after I joined, Betsy flew to Chennai to conduct a series of meetings and engagement sessions. I was sitting in the office staring at the walls and thinking, “How will I survive?” But that loneliness disappeared almost immediately. Over that same week, I was introduced to a number of the Keystone team overseas via video-conference. I was overwhelmed by the warm welcome I received in my meetings with Genevieve, Pam, Ernie and Melissa. It was an amazing experience to connect with people from a different end of the world. They all made me really comfortable and I never felt that I was working with a new and unfamiliar team. “Beautiful people with beautiful hearts,” is how they seemed to me. I also noticed during these initial meetings that there is so much to learn from each of them, each with different skills and expertise. I was so involved in Keystone’s work immediately that I had no time at all to stare at the walls and worry.

Before joining Keystone, my thinking towards people with disabilities was different. This was not an issue at the front of my mind, and I rarely thought about disabilities or how they impact people in India. Now that I am becoming more engaged with it through my work, I feel committed towards the issue. After a month working at Keystone, I feel that I have discovered something new in myself. I can feel the pain and discrimination faced by people with disabilities. I was given an opportunity to attend some engagement sessions conducted by Betsy and Thomas Neuville. It was an emotional moment for me when I met with such beautiful people, families, teachers, and professionals, and realized the poor treatment they have received at the hands of our society. They helped me to feel the pain they were going through – a pain brought on not by disability, but instead by the feeling of shame society lays onto people, and by the limited sorts of help families can find in their communities.

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In one of the sessions I met the mother of a child who told us proudly of her son, who experiences autism, and how he has, in her words, added colors in her life. She felt blessed to have a son who was a unique and significant gift to her and the world. In this moment, I realized that we all can learn from this mother who treats all her children equally. She dreams for an equally bright future for each of them, and wants all her children to have full and good lives. She also shared that she was amazed and proud to see her son’s painting of the Titanic, which sold at an auction for Rs. 11000/-.

I would like to leave you with a question. Like this strong mother, why can’t we all play a role in adding more colors (e.g., joy, love, independent living, social awareness, acceptance, parents’ awareness, equality) into the lives of all Indian people, including the lives of people with disabilities? Would this not enrich us all?! Join hands with us at Keystone Institute India – an educational institute on disability, community and innovation. This national institute aims to provide training and organize consultations related to the creation of responsive community support for men, women, and children living in India with disabilities. It will also focus on supporting individualized alternatives to congregate care and institutionalization, where together we all can make a difference in the lives of people with disabilities.

I am honored to be part of this team, working to make positive changes in the lives of people with disabilities. I will make every effort to live up to their dream.

Valued Roles: A Gift that Keeps on Giving

We can work towards the “good Indian life” for people who are vulnerable by focusing on helping people have social roles which are valued.  Social roles which are typical and valued open up all kinds of doors for people – and seem to be the typical ways that most of us gain acceptance, belonging, personal growth, friendship,opportunities, and a good reputation.  Roles also help us define who we are, and the way we envision ourselves.  Now that’s something we want to pay attention to.

Activities are different than roles.  They may be interesting, fun, and even memorable (going to a football game), but they are not the same as a role (being a football fan). Roles bring all kinds of good things along with them, and they are things vulnerable people really must have.

The parent of a young man with a disability brought this to light so wonderfully at a recent dialogue session.  She observed that, until recently, her son, Pradeep, spent his days in  the candle-making room at a workshop, and when asked what he did for work, he would always reply “I make candles”.  Now, he works six days a week at the The Red Fox Hotel, and when you ask him what he does for work, he says, “I am an employee at Red Fox Hotel”.  Pradeep feels the immense difference between an activity and a role, and it shows in his life, and the way he describes his work as role, not activity. A small lesson from this young man and his proud mother, but one that matters.

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The Doctor Is In: From Menacizing to Medicalizing

 

I was recently captured and unsettled by a widely circulated global conference notice describing mental disorders as an “enormous disease burden” on human society.This statement should give us a bit of pause, and cause us to reflect on what we know, what we assume, and what the impacts of such a mindset may be.

Humans have struggled with the nature of mental disorder since at least the beginning of recorded time, and many of the powerful metaphors of such live on with unbelievably deep and strong roots – they just won’t give up their holds on our minds, whether consciously or unconsciously. Many contain truths and helpful ideas, but each also falls short of providing a clear way forward for how to think about this human condition that impacts all of humanity and each of us.

People with mental disorders have been seen and treated as sages, wise men and women “touched” by the divine, and deeply respected, even cherished and worshiped as oracles.  If that is the role of people with so-called psychiatric conditions, we can imagine the lives and treatment they might have received at the hands of society.

“Menacized” in the middle ages in much of the western world, the focus on requiring people to submit in fear through methods of confinement, fettering, and weakening through beatings were the obvious result.  One cannot help but realize the parallel with the US practice of confining people with serious mental illness in prison today – over 350,000 as of 2012. This belief system – mentally ill as “menace” – has great power in our minds and simply won’t give up.

The predominant role today across the world represented a sea change – the envisioning of mental disorders as a medical condition. This is accepted almost without question in many parts of the world.In some ways, it has been a very effective change that has brought some good things for people who experience conditions of disordered thinking.  On a very basic level, it has been said that the purposeful shift to the medical mindset meant that, when a person had a episode of significant emotional distress indicating a mental condition, the men in the white coats showed up with an ambulance instead of the police with a wagon.

But the medical model carries with it all sorts of incoherencies when applied to mental disorders which cause distress and problems for society, but especially people experiencing such disorders. For many people, being prescribed lots of powerful medications without great care and careful oversight have wreaked havoc on people’s bodies and minds and focus, and have sometimes made recovering a full life out side the mental health system all but impossible. And, when people fail to respond to all sorts of therapies and treatments, custodial care or imprisonment remain as very real possibilities in many parts of the world.

Of course, looking deeply to history and around the edges of popular practice often yields great insight and even great hope, a much needed commodity in the mental health field.One need only look to the moral treatment movement to see glimpses of the power of people to get stronger, to gain a fuller life, to recover and even heal from difficulties both within the body and mind, and from a human society which can inflict devastating  wounds on those who are seen as different. One can look to  an organization in service to women with mental disorders who chooses to refer to the highly vulnerable and deeply persecuted women it serves as being “in distress” rather than “mentally ill”. This is a small but important distinction that allows for a different view of those women, and a whole different set of assumptions about what they might need.

We should be cautious about the mindsets we use to try to understand mental disorders.  There is no question that many of the frameworks for understanding it may be helpful – the medical model offers something important, but the disease mindset causes big problems in how people get treated.  The “recovery” framework, the idea that people can live full lives, contribute and grow has developmental assumptions which not only give hope, but help people learn to manage the aspects of the mental disorder which make life difficult. At the same time, this has failed many people languishing in prisons across the US. One thing we do know is no single framework offers a complete understanding of the phenomenon of mental disorder. Assuming that the answers lie only in the realm of science, or society, or medicine, or religion leads to “answers” we might regret.

 

 

 

Living Forwards

“Life can only be understood backwards; but it must be lived forwards.”
Søren Kierkegaard

What does the past mean for those of us trying to craft a positive future for people with disability? Understanding backwards, as Kierkegaard reminds us, creates the wisdom to move forward with a strong awareness of what we are moving away from, what we are moving towards, and what we are learning from the journey.

I spent time this week at a conference of the Pennsylvania Coalition for Honoring the History of People with Disability, whose mission is to tell the story of disability history, especially for people with intellectual disability, and learn from that story.  It is one fraught with terrible acts and big mistakes, but it is also punctuated by bright and shining moments of possibility and promise.  Often, the brightest of moments are sandwiched in between the darkest acts and practices.

Of course my mind begins working on the complicated issues of the history of people with intellectual and psychosocial disability within India.  Our work in India has included asking the question, “what is the history of disability within your family, your community, your country?”  We are intensely interested in the answers – so far nearly 200 family members, people with disability, and professionals in several geographical areas within India have contributed.  The picture is being woven together as a broad swath of Indian society  shares their seemingly contradictory experiences of not only profound rejection, but also deep connection and acceptance.

 

 

Pulling the threads of the story together begins to show the journey that Indian society is in the midst of, and that people with disability are living out and experiencing. Hard questions are posed in the telling of the history, that make us think beyond conventional wisdom and glib truisms.  “What is institutionalization?” arose early on in some of the sessions, and we all struggled with this question. Is institutionalization a mindset? Is it a building? Is it a group home or a sheltered workshop?  The word loses context quickly, and makes those of us new to the culture broaden our perspectives and, as a mentor of mine says, “go higher” in our thinking.

Many invested people are telling of the hard work of changing attitudes and fighting stigma in India, and the departure of the pity/charity model in favor of a developmental and human rights model.  I wonder all the while if India must progress through some of the “stages” in western countries that have worked towards community imperfectly and with some strong regrets. If there are global lessons to be learned from history, it seems wise to add those lessons into the mix and allow them to season with Indian people advocating for change. It also seems wise to walk side-by-side with people with disabilities and their families as a human service system is developed, to avoid services which are based solely on professional experts.  It seems wise to craft supports which avoid “community segregation” by clustering people with disabilities all together apart and away, even if that is a developmental phase many societies have gone through and are now trying to dismantle in favor of more natural, inclusive supports. Will the burgeoning Indian economy eventually demand a service economy that relies on expensive professional supports, and if so, how will Indian advocates respond? Talking about this issue now rather than once the issues arise also seems wise.

I greatly enjoy the practicality and straightforwardness of the vast majority of people I have been collaborating with and listening to over the past few months. I appreciate the question, “So what is the answer?” and “What is the correct model?”  Of course, the answers are complicated but lie deep within that fabric of history that lies within a rich and complex Indian society.  What will be learned, and how will the learning be used to weave the next few decades in our ‘forward living’?

When the Indian Coalition to Honor the History of People with Disability (yet to be formed, of course) holds its conference in 20 years, what will the story be, and who will have written it? This question should keep us up at night worrying a bit, but also make us feel deeply motivated to work hard to craft the story that we will have few regrets about.

Plus One: A New Team Member for KII

We are pleased to announce that Bindu Sengar has joined the team at Keystone Institute India (KII). Bindu comes to her new role as KII Administrative Coordinator with great enthusiasm and capacity for this work. In this position she will provide key administrative support to our education and consultation activities. She began her full-time position with us on February 26.

KII Team

Betsy Neuville, Bindu Sengar and Genevieve Fitzgibbon

Bindu has a Bachelor’s and Master’s degree in English Literature, and is working on her post-graduate diploma in business analytics. She has years of experience in the development sector. Her most recent job was at Oxfam India where she began with a position managing the front office in the Lucknow regional office, after which she was promoted to Programme Associate at the Oxfam national office in New Delhi. Here she was responsible for helping to plan and execute various advocacy programmes focused on education, health, gender, and economic justice. She was also deeply involved with capacity building of staff and partners, event management, hosting and coordinating national and international in-house meetings, monitoring and evaluation of grants projects, and supported a multidisciplinary team of programme management professionals. Prior to this, Bindu was in charge of front office operations at the Taj Residency Hotel in Lucknow, one of a renowned chain of five-star luxury hotels, and earlier, was a customer care executive managing the head office operations for a company in the aviation industry.

While the work of administrative coordination should be familiar and comfortable next step for Bindu, community inclusion and disability rights is a totally new focus for her. But this sort of “stretch” is something that she is excited about. “I did a lot of research on Keystone before I took this job. The Mission and Vision of Keystone are inspiring to me,” Bindu shared. “And I am looking forward to helping us build strong connections and a foundation for this work throughout India.”

Her skills and experience will be a great asset to KII. As Administrative Coordinator, Bindu will be responsible for all aspects of office management, coordinating a host of training events and meetings across the country, and liaising between in-country staff, international consultants, trainers, allied agency staff, and others community partners. She will play a pivotal role in establishing and maintaining a base for our India central office in New Delhi. Bindu will support our Institute Director, Betsy Neuville, in the organization of all program activities and will work in close coordination with Project Manager, Genevieve Fitzgibbon.

“Bindu is a welcome addition to our team, and brings a wonderful new perspective and a ‘can do’ approach,” said Betsy Neuville. “She has already gone above and beyond to give our initiative a strong start, and we are proud that she has brought her diverse experience and education to our work.”

Bindu can be reached at:  bsengar@keystonehumanservices.org

We are delighted to have her on board!